A lot of my community feels isolated. They don’t want to go out and engage in the world as they used to know it.
Why does the foundation focus on improving quality of life?
When we first became a foundation my initial interest, like Michael J. Fox, was to raise money for research that would find a long-term cure for the disease. But as time went on and I met more and more of my community—my tribe, as I call those of use with Parkinson’s disease—it became clear to me that there is a whole segment of my community that was just waiting on hope that some researcher somewhere would come up with a cure-all fix for the disease.
So many of us were just waiting, and that kind of passivity leads to a certain amount of decline. And life was just going by and going by and going by. I really felt it was important that people engage in their own health more, and find ways to not just stem decline but find ways to enjoy life while living with this progressively degenerative disease. And those messages and that encouragement, backed up by solid information and programs, has been very, very well received.
And how has cycling informed your current mindset?
When I was a rider one of my primary skill sets was sprinting. I was a fast finisher at the end of a bike race. I’ve always been more of a moment-to-moment kind of guy. On that day of the race, racing was the most important thing I was doing. I became quite adept of freeing my mind from worries or concerns about the future. That moment-to-moment focus has really helped me now with this disease because if you’re looking long-term at a progressively degenerative disease, that can lead to a hopeless situation.
One thing that I really promote—and hence the word victory in a lot of things the foundation produces—is not focusing so much on the long-term but bringing things in close and enjoying aspects of today, and that way you’re able to enjoy your life more. And it’s out of necessity. It really allows me to live a positive life—just because I actively seek out positive situations and positive experiences.
And how do you live that philosophy?
Whether it’s just getting out on a really beautiful morning and walking on the trails by my house or having a good conversation or a good cup of coffee or a type of wine I like, it’s a matter of really appreciating those simple things. That sounds trite and cliché, but it's a proven survival tactic, and I advocate it unabashedly. When I am focused on those good moments and aware of them and acknowledge them, I put them in the victory column.
What does victory mean for you now?
In bike racing, if you win something you better put your arms up. In those few fleeting seconds that surround crossing the finish line and winning the race, you don’t have Parkinson’s; you’re in another, different place. So that’s my philosophy on finding my own cure—making those victories count. Just amplifying the amount of moments you’re not in the Parkinson's body, but you’re purely enjoying your life. All of that comes from bike racing.
And have you always had this outlook since your diagnosis?
No, no, no. It took me a few years. Immediately after diagnosis I was in denial. It took us actually moving to Italy. As part of my understanding with the disease, I needed to slow down and stop being in perpetual motion and stop trying to push myself in the ways I had for years and years at work and in athletics.
It was in Italy where I really came to see the beauty of observation. I realized there, first and foremost, what a beautiful place surrounded me. Boulder is a beautiful place too. But when you’re so closed in with your own myopia and encased by this disease, you don’t open your eyes as much and see things clearly. But there was just this visual fiesta that surrounded us every day. And I had always liked photography and taken pictures. It was there that I started really noting and appreciating all of this beauty around me.